Monday 11 November 2013

On the topic of Institutions, big or small, for disabled people.

I believe that all Institutions should be abolished for anyone. This NDIS is the opportunity to do this. I don't have all the answers for alternatives because what would I know about supporting a person who has multiple profound disabilities. I am not a parent or carer of someone else. And just because I talk about rights and ableism doesn't mean I have to have all the solutions for the problems that the non-disabled have created. How could I? I haven't had the right to question ableism let alone challenge it till lately so how could I possibly have all the solutions for every disabled person? It would also be extremely presumptuous of me if I thought I could.

Someone told me that I have always had the right to question ableism or anything else. It fact until the last 20 years I have not had the actual "right" (legal right) to question ableism. Oh yes I could say it and they would tell me to get stuffed. And that was it. No recourse.

They also suggested that I be careful about judging others and seeing my own experience as universal. I don’t think my experience is universal but there is a tried and tested universal ‘way’ of living. I know how able bodied people live and seeing as they reckon they are the majority then why shouldn't the majority be all people. I am a people. Other disabled people are people.

If it's a good ‘way’ for able bodied people to live after thousands of years of evolution then we must all be able to live like that. It must work fairly well. The thing is that we disabled people have not until recently be included in that ‘way’, the way of the nuclear and extended family. We have been killed, left behind, cared for by families, died young, left to wander the streets and beg, or more recently, locked up in institutions. And the built environment was built to exclude us and still is. People’s attitudes were formed to exclude us and still are.

Then people tend to say, we moved people out of institutions and it didn’t work. The devolution of the Mental Institutions is a perfect example of a very badly done devolution. Throw them out and seriously underfund support. Terrible. So it is deemed a failure. And it is. But not because the people with psychiatric disability failed. No. But because the system and society failed to accommodate them. Failed to make a genuine space that would fit them.

Someone once said that able bodied people are PUT in institutions all the time and "dumped together". Kids are put in (segregated into) classes at school. All sporting competition is graded/segregated into levels. Many old people choose to live in old people's homes. But I just cannot understand how anyone could compare school classes, or sporting teams with a place of abode, a place you live your life in every day or week days or whatever you are given for the rest of your life. And I am not sure that too many old people really choose to live in old people’s homes.

Someone said that it was great because a band or group can go and entertain a bunch of old people in one place in an old folks home and it would be too hard to go to each individual old person to entertain them.

Ahem, so we put old people in institutions so that the band only has to go to one place, for the convenience of the band! Isn’t the usual way that the band goes to a venue and the people go (with their needed supports) to the venue and see the band. And then they go home with their needed supports. That’s what younger people do.

We are all human and we all eat, drink, shit, pee, recreate, work where possible, sleep and other stuff. The differences in how we disabled people do those things is the crux of this matter and is often used as a justification for institutionalising us. Because those differences have not been accommodated by the whole of society. The NDIS is a means to pay for and create those new ways of accommodating those differences. That is why we must aim high now. Right now while it is still forming. We must make the rhetoric REAL. We must challenge when they want to restrict us in a way that a non-disabled person would never be.

For example, compare, a helpless 4 month old baby and a helpless severely multiply disabled 35 year old and a helpless frail, wobbly 78 year old with dementia. They all have the same needs. And the same abilities. Pretty much. Because, compared to the “norm” they are all “disabled”. The 4 month old gets looked after and nurtured and helped to be the best she can. The 35 year old is left to exhausted parents with some crumbs of help until the parents die or she is put in an institution. The 78 year old is left to exhausted children (if she has any willing) with some crumbs of help until they die or she is put in an institution. But they are ALL people with the same human rights. Yes. So why the different treatment?

We know that the 4 month old’s different needs are temporary, they will grow up. That’s terrific. We even know that in a way the 78 year old’s needs are temporary but still could be a very long time. And the 35 year old’s needs are for their whole life. OH NO! SHIT!! And they all turn away. And pop a coin in a tin. So we get used to this neglect over the centuries. The able bodied get used to it too. And nobody can see a way out of it because that ‘way’ is what we know. That’s how it is. Shrug. But NO we said and eventually they said NO too, and the NDIS was born. Yes it’s just a baby and must be nurtured so it can grow and become the best it can be.

So let’s find a way to use it.

To be very clear, I am talking about Institutions as being places large or small that are separated from the majority of the population, where people with different needs for support are PUT for all or part of their lives. Not a school or a sporting group which are normal for the majority. But put together for the convenience of the people who are meeting their different needs or perhaps even a band who might want to entertain them. A place that is not normal. And seeing as disability is normal just like babyhood and agedness is normal then I think we should be able to live the normal and ordinary life in the same way as the majority do. It won’t happen overnight but we must help to make it happen.


  1. Thank you Glee for writing this. There is no place for institutions in our society!

    As the parent of a child who could quite easily fit the 'criteria' for this type of living any suggestion by others for these options to be recreated, recognized and respected is a real danger for him. It will mean there's always the chance others could question his right to exist in his community because there will continue to be acceptance that "isn't there places for people like him?".

    I try hard to respect other family's choices... but it's difficult when their choices for their family member actually has the potential to pose a risk for mine and his hold on his rightful place in his community.